Which boob wrote this:

Cancer free. Not cured. And other learning.

A handmade pillow!

 Yesterday I had my appointment with the oncologist. I learned a lot of things.

  • I have talked about my oncopanel and how it allowed my oncologist to assess the value of putting me through chemotherapy. What I didn't realize was just how new it was: I'd read some papers on it and the dates were recent, but I wasn't certain about when it was put into practice. I also got a letter from the company that does them mentioning that the insurance would probably just deny the claim and they would handle the appeal -- generally the mark of a newer technology. I learned yesterday that we've been using this tool for under 10 years, but now we know that it's incredibly beneficial! While my doctor didn't have a paper to point to to say how many people no longer get chemotherapy they don't benefit from, anecdotally, she guessed it was about half. (Keep in mind that not everyone is a candidate for the oncopanel screening, but still, that is substantial!)
  • Also until recently, everyone had full axillary lymph node dissections. This is where they rip out allllll the lymph nodes in the armpit area. There are a lot of them. It makes the patient extremely prone to lymphedema, which is a horribly painful and difficult to treat condition. But in the past decade, we learned that sentinel lymph nodes were enough to start with; if those showed spread, then the surgeon should move on to determine the extent of spread, but for people with nothing in the sentinel (like me), a full dissection is not helpful and indeed is overtreating.
These together mean that while I really hope it gets better still, "there's never been a better time to have breast cancer." (particularly stage 1, caught early breast cancer...) Of course, if possible, still avoid this shit.

Onward.
  • People have asked me if I am in remission, cured, etc...and I didn't really know what my status was or how the multiple terms differed so here's my best answer based on what she told me:
    • Cancer free: I am now considered cancer free! This is also known as in remission or "NED" which stands for No Evidence of Disease. I meet definition this because I had no spread detected in that sentinel lymph node, and all the cancerous tissue was, we believe, taken out. Because the margins were negative (the tumors were well contained in the samples), there's no reason to think that stray tumor remains. Downside is that I can no longer use the "I can't, I have cancer" excuse when I don't want to do some chore with Stephen...but you know, tradeoffs. This is one I'll take.
    • Cured: this one is tricky. I am not cured. She said oncologists don't have a great shared definition here, but most don't use this word until someone is 10-15 years without a recurrence. But this doesn't mean I have cancer. See, tricky.
  • Tamoxifen: she said most side effects go away in the first few weeks but may take a few months. The insomnia is real still, but I think that was there regardless of the medication; it may just be exacerbating it a bit. Still, I look forward to fewer headaches, less tylenol/advil soon.
  • Alcohol: I got a LOT of questions about how alcohol could lead to recurrence and what that mechanism was. I also HAD a lot of questions. We don't know a mechanism. She said that people have only recently started looking at the role of diet in breast cancer, which is astounding since cancers are so often very metabolic in nature. She was clear that alcohol did not cause my breast cancer, and honestly that the guidance on alcohol is not very nuanced at this point. But as I said to her, really, cutting back on alcohol is probably good in general. And wow have people come through for me with non-alcoholic fun beverages. Thank you.
  • Weird alert. So I had cancer that was sensitive to both estrogen and progesterone. But I realized that all the meds focus on suppressing estrogens. So I asked about this, and she said that 1. we don't really have great progesterone meds (and I suspect that would have important and negative impacts on steroids in the body since progesterone is a precursor for a lot of other important things?). But ALSO that patients with tumors sensitive to progesterone (but not estrogens) also respond to the estrogen-inhibiting drugs. Mind. blown. WHAT. 
Next month is the surgeon follow up, and I see the oncologist every three months now (and get labs done too). Cancer is time consuming...and I guess so is being cancer free?

Also, a friend contacted me and asked if I'd like to talk to his mother, who is a tumor registrar. I had to look this up. I learned that every diagnosed cancer in CA (and other states have registries too) sends anonymized data to these registries and they collate data sets. When you see the American Cancer Society cite cancer statistics? This is where they get them! So of course I said yes. She was lovely to talk to, and I learned all about California's registry, how the data are collected, and that yes, anyone can request data. Before anyone panics, again these data are totally anonymized -- even if you got my case data, you would be hard pressed to know it was me. But it is the type of data repository that allows researchers to look at patterns and say hey, we see something here! And these repositories are not just for breast cancer -- they are for all types of cancer (except cervical for some reason which I neglected to ask why).

And finally, this week, the pillow above showed up at my doorstep. My friend Christine hand knitted this. When I thanked her, she said that it was either this or a giant knitted boob, and I bought my stuffed boob already. I am amazed by the knitting skill but also continually amazed by the love and support I have gotten from everyone. Picture taken with a mocktail made with Monk The Forager mixer, courtesy of Wesly.